Most Boomers Prefer Care at Home, but a Medicaid Waitlist May Not Mean What Families Think

Consider a retired schoolteacher in her seventies. Long before she expects to need help bathing, cooking, or taking her medications, she adds her name to her state’s Medicaid home care waiting list. At Sunday dinner, she tells her children she is “on the list.” To her, that sounds like the matter is settled. No one has reviewed her finances, and no one has checked whether she actually needs care. She has heard the wait is 34 months, so she assumes her clock has already started.

Many people would share her preference for care at home. In a survey of how Americans plan for their finances, Northwestern Mutual found that 83% of Boomers would choose in-home care if a health event required long-term support. The complication is that the list she joined may be very different from the one behind that 34-month figure.

What a Medicaid Home Care “Waiting List” Can Actually Mean

Medicaid is the federal-state program that helps pay for long-term care for people with limited income and assets. It is not the same as Medicare, which most people receive at 65 and which does not cover ongoing custodial help at home. Families often confuse the two, and that confusion can lead to plans like hers.

States often deliver specialized Medicaid home care through waivers, which can limit how many people can receive services. When demand exceeds available slots, a waiting list or interest list can develop.

KFF, the health policy research organization, surveys state Medicaid officials each year about these programs and has found that some lists include only people the state has already determined are eligible. Other lists include people whose eligibility has not yet been reviewed. Some states call these interest lists or referral lists, but the labels can mask important differences.

Why the 34-Month Average Can Be Misleading

KFF says people who were eventually served through waiting or interest lists had waited 34 months on average. But that national figure combines two very different kinds of lists.

The divide is significant. In one recent year, 32 states screened people for eligibility on at least one waiver list. Eight states — Alaska, Florida, Iowa, New Mexico, Oklahoma, Oregon, South Carolina and Texas — did not screen anyone on any list, yet those states accounted for 56% of everyone waiting nationwide. In other words, more than half the people on the lists were in states where joining the list did not mean anyone had already confirmed they were eligible.

There is another limitation to the average: most people on these lists are waiting for programs serving individuals with intellectual or developmental disabilities. That makes the 34-month national average a weak guide for how long an older adult might actually wait.

Reaching the Top of the List Is Only the Beginning

On an unscreened list, getting called is only the start of the process. At that point, she may still need to complete a full financial application. She may also need a level-of-care assessment to show that she needs the type of help the program covers, and she may have to spend down savings to meet her state’s limits.

If her income or assets are too high, getting to the top of the list still does not guarantee services. Years spent waiting may move her closer to an opening without resolving whether she can actually use it. Her family may also discover that her home, her IRA, or a gift she made to a grandchild matters in ways no one has yet examined.

A screened list works differently. In that case, the state has already completed some eligibility review before adding her, so her place on the list carries more meaning. The family also has a better chance of learning about any eligibility problem before her name reaches the front.

Two Questions Families Should Ask in Writing

Families can clarify the situation by asking the state Medicaid agency or the waiver office two questions:

1. Is this a screened waiting list or an unscreened interest list?

2. Has anyone reviewed her finances or care needs yet?

If the answers are “unscreened” and “no,” the family knows that being on the list is not the same as being approved for services. The real work of gathering financial records and learning the state’s rules is still ahead. Getting the answers by email or letter is important, since a phone conversation may not carry much weight years later when her name finally comes up.

Timing matters, too. A parent who is healthy now has more room to sort through paperwork, records, and family decisions calmly. After a fall or hospital stay, the same tasks often have to be handled quickly.

States Will Have to Be More Transparent Soon

Greater transparency is coming. KFF says that beginning in 2027, states will have to report whether people on their waiting lists have been screened for eligibility. That should make the national figures easier to interpret.

For now, being on the list can feel like a plan. But for her family, the most important question is whether the list actually knows anything about her yet.